All chronic patients depend on their providers, some more than others. It’s kind of like a cheerleaders’ pyramid. I’m at the top balancing precariously depending on how well I’m doing with my own care. Holding me up are a couple of levels of supporters – providers, family, friends, even my employer. Some are bearing more weight than others, and if something happens to that support, it can bring the whole pyramid tumbling down.
The two supports I depend on most are my endocrinologist (diabetes) and nephrologist (kidneys). They help me stay in front of my most serious conditions, and help me deal with it if I falter.
A few months ago, my nephrologist told me that he was retiring. My gut tightened in reaction, but he knew me well, so he gave me the names of a couple of doctors who were capable of handling a patient like me – long and complicated medical history, independent, control freak, etc. I was confident that one of them could take his place in the pyramid.
Fast forward four months, and I was sitting in the same office, waiting for a different doctor. The first difference was that a fellow came in first. I prefer not to work with fellows, due to an incident many years ago, but it’s a teaching hospital, so it wasn’t that big a deal. When the doctor returned with the fellow, I started to tell her about my medical background and what was going on in my life, but she did not seem interested in anything except what the test results were telling her.
I tried to explain that, though my numbers were good, I wasn’t in a great place with my diabetes, but what she chose to focus on was nutrition. In her “admittedly not professional opinion”, she disagreed with how I was handling my diet. We spent several minutes on this while she spouted off what she thought based on no nutritional background at all, while I attempted to explain that I was trying to figure out what worked for me.
In the end, she came to the conclusion that, because I feel the need to hypercontrol everything I can, I didn’t need as much support as other patients. Not true. How did she think I got to have such good, stable numbers? I guarantee that it was not through lack of support.
She also told me that she didn’t need to see me for eight months. Most of these appointments happen every three to six months. While, yes, I would see and go over my test results every four months with my endocrinologist, but my endo couldn’t tell me about studies and developments around kidney disease or whether the general approach and way of thinking about the condition was changing.
On the way out, I went ahead and made the appointment for eight months out, at first thinking, well, this was just the first appointment. Maybe it would get better.
As I walked to my car, I thought that maybe it wouldn’t hurt to have a provider with a different style, who was less involved.
On the drive home, I recognized my disappointment. No, this provider wasn’t going to work. Treating chronic conditions wasn’t all about the numbers. All the providers who worked best for me were aware of what was going on in my life, what was working, and what needed work (so they could ask at the next appointment). I knew that when they pushed back against something I wanted to do, it felt more like they were pushing with me, in the same direction, as opposed to against me, which is what this felt like.
By the time I got home, I was already generating strategies to cancel the appointment I had just made and to start asking around for other recommendations.
So, my pyramid will remain a little wobbly for a few more months, but with so many other supporting people in my network, I still have time to find the right nephrologist.